About Abbie:

In November of 2011 I was diagnosed with a ruptured ovarian cyst after many ER visits. The cyst disappeared and in December I was feeling great, we went to Hawaii and all was good. In January of 2012 I started experiencing the same pain, we immediately got an ultrasound and I was diagnosed with another ruptured ovarian cyst. It is now the end of April 2012 and after many tests and a lot of blood I have been diagnosed with POTS- a form of dysautonomia called Postural Orthostatic Tachycardia Syndrome, Ulcerative Colitis, Psoriatic Spondyloarthritis, and Polycystic Ovarian Disease.

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My condition is a life long chronic illness. There is no cure, there is no magic medicine to take the pain away. As of now, we are in a trial and error phase with each of my doctors waiting to see what medicine either helps control the symptoms or doesn't. People with POTS can grow out of their symptoms when they reach their twenties, but only a fraction of them do. My life will not be the same as it was before, but I hope to make it as close to it as I can. I may not have disfigurement, a rash, bones popping out of my body, or any other form of illness you can see. To some I look the same as I did before I got sick. Invisible Illness and Hidden Disabilities are a very real thing that not many people know about.. it's invisible to the naked eye. Even with people without an illness can look great but feel the total opposite, you just don't know because it is inside.

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In my condition, it is all things I cannot control. I have my good days and my bad days, but their are always some symptoms present. I am a very changed person after becoming sick. However I am still Abbie.

 

An Update From Mom (July 12th, 2012):

​Miracles do happen!

We did it! Our journey started July 31, 2011 with Abbie's pneumonia. Three hundred and forty six days later we have a plan...

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Dr. Goodman is an Angel on this Earth and he works at the Mayo Clinic in Scottsdale Arizona. We have met many wonderful physicians along this medical journey. Many of Abbie's physicians truly care about Abbie as a person and I believe they want her to be as healthy as I do.

My sweet Abbie endured many tests here. Each test was precisely synchronized and on time. We never had to wait and not a single appointment was late. Every person we have encountered from the hotel staff to the shuttle driver to the volunteers was kind, caring and so very helpful. The volunteers even pushed the up or down arrows for the elevators and made sure we knew which floor to go to and where to check in.

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THE PLAN!

Dr. Goodman believes in lifestyle changes first and foremost. He wants to treat the cause of Abbie's illness not simply medicate the symptoms. Once you start medicating the symptoms the pills snowball into a huge backpack filled with meds taken four times a day. Who knows if one medication is causing the symptoms requiring another medication and so on and so on.

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#1-- SALT. Who knew. The normal daily requirement of salt is about 2,300 mgs per day. Abbie has to increase her intake to TEN THOUSAND mgs per day orally. Sodium tablets are hard on her stomach so we are searching for other ways to get it. He recommended Nuun a hydration drink used by marathon athletes and triathletes. (Yay for amazon.com). There are other options, Gatorade and Pedialyte but Abbie really only likes water. Hopefully the Nuun will be super tasty!

#2-- COMPRESSION STOCKINGS. I know, I know, compression stockings are those hideous things old people wear to keep their legs from swelling or to help with varicose veins.. Abbie needs to wear them to keep the blood up in her brain. He suggested that we look for compression socks that many runners wear. Not quite as good as the prescription type but anything will help. His nurse thought she could also try Spanx! HAHAHA. Can you imagine Abbie, tiny little thing that she is, wearing Spanx... Their website caption reads, "shed the bulk, feel the breeze".

#3-- NO HOT SHOWERS OR BATHS. Even warm showers can cause her to pass out.

#4-- ELEVATE THE HEAD OF HER BED 6 INCHES OFF OF THE FLOOR. This means putting cinder blocks under the head of her bed so the entire thing is at an angle \ . For some reason this helps dysautonomia patients keep their blood pressure at a more manageable level.

#5--ONE CUP OF CAFFEINE PER DAY

#6--EAT SMALL FREQUENT MEALS THROUGHOUT THE DAY. Snack! Snack! Snack! When dysautonomia patients eat a large meal all of their blood pools in their abdomen, causing huge brain fog, fatigue and nausea. Tiny meals frequently eaten will help prevent this.

#6--SHIFT HER WEIGHT WHILE STANDING AND CROSS HER LEGS WHEN SITTING.

#7--EXERCISE (Abbie's favorite). She has to start slow and with only five minutes. Recumbent biking, floor exercising to strengthen her legs and abdomen and slow steady walking.

 

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